Approximately 1.4 million children aged 0–4 in South Africa are living with some form of disability, yet current survey and assessment systems are simply not built to capture them.¹ Children living with disabilities are 25% less likely to attend early learning programmes (ELPs),² and for the most part, are invisible in the data systems that are meant to support them. Physical inaccessibility, undertrained practitioners, and persistent stigma compound the barriers to participation in early learning programmes. Without reliable data, evidence-based advocacy and resource allocation for the structures that support children with disabilities become near impossible.
At DataDrive2030 we are aware that current survey systems fail to capture the prevalence and complexity of disability in young children, widening policy gaps and limiting appropriate responses. Measurement tools like the ELOM 4&5 and ELOM-R may be South African gold standards of population-level monitoring of child outcomes, but they are not currently designed to assess children living with disabilities. These are not new observations, but DD2030 is starting along the journey to respond to them with deliberate, evidence-based action. In early 2026, DD2030 commissioned a respected group of disability consultants to complete a significant three-phase scoping study: Bridging the Data Gap for Inclusive ECD in South Africa. Completed in April 2026, the study surfaced just how great the need for data is and delivered a starting point for DD2030.
The aim of the scoping study was to look at the feasibility and appropriateness of expanding or adapting of our suite of early years assessment tools to ensure greater inclusivity of children with disabilities.The study used the World Health Organisation (WHO)’s biopsychosocial International Classification of Functioning, Disability and Health (ICF) framework to define disability, a deliberate choice that positions the problem not just in the child, but in the interaction between the child and their environment.
What the Research Found and What DD2030 Is Doing About It
The team reviewed international ECD assessment tools to identify what already exists and what could work in the South African context. The Washington Group/UNICEF Child Functioning Module (CFM) was identified as the gold-standard screening tool for capturing disability prevalence and type. DD2030 is looking at adding the CFM to our suite of tools for inclusion in large-scale sampling processes. The hope is that this will make children with disabilities more visible and enable the sector to understand the nature and scale of support needs. This is a critical step for evidence-based advocacy and resource allocation.
It is not possible for tools that are psychometrically valid and designed for population monitoring, for example the ELOM child assessment tools, to assess a wide range of disabilities at the population level. But the development of psychometrically valid, fair and standardised assessment tools of this nature is an intense and technically challenging task. For example, in 2024 the ELOM-D was piloted – the first nationally recognised and standardised early childhood development assessment tool in South African Sign Language (SASL).This instrument evaluates whether Deaf and hard of hearing (DHH) children are meeting age-appropriate milestones, compares them with the general population, and identifies support and resources required for them to fulfil their potential. In future, using an approach aligned with global best practice, DD2030 will start looking at ways it can maintain the psychometric integrity of existing tools while extending their reach through accommodations. In the immediate term, DD2030 is adding disability-inclusive modules to the classroom observation tool (LPQA) and the caregiver interview (HLE). These capture the environmental and contextual barriers to disability inclusion, such as inaccessible facilities, practitioner gaps, lack of resources and disability in home environments.
Why This Matters
The ambition behind this work is straightforward: no child should be invisible in the systems designed to support them. By embedding disability screening into studies, adapting existing measurement infrastructure, and building the data backbone that makes disability visible, DataDrive2030 is pursuing an approach that is both principled and practical.
For a country where so many young children living with disabilities remain outside the reach of quality early childhood development support, and where the data to advocate for them is lacking, the steps DD2030 is taking now are small but hopefully significant.
References
¹ National Planning Commission. Disability Background Paper: The Status of Disability in South Africa. August 2020.
² United Nations Children’s Fund (UNICEF). Seen, Counted, Included: Using Data to Shed Light on the Well-Being of Children with Disabilities.
